#livingwithpku — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #livingwithpku, aggregated by home.social.
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Getting ready for Valentine's Day - and Pancake Tuesday :)
An easy low protein recipe for reliable PKU pancakes: photos & video guides :)
Ideas for protein-free, and measured protein toppings.
https://www.pigpen.page/pku-pancakes/
#PKU #LivingwithPKU #LowProtein #LowProteinIdeas #Phenylketonuria #Pancakes
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Monthly email on PKU, Brain, and Mental Health:
🆓 A free workshop on Living with PKU
💊 Genetic medicine, personalised treatments, and PKU
🧠 Campaigning for change in strokes and brain injury support
and 💉 What is the PKU injection (Palynziq)?
https://www.pigpen.page/february-2026/
#PKU #LivingwithPKU #Phenylketonuria #Palynziq #BrainHealth #BrainInjury #Stroke #NHS
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What is Palynziq? And why does it have so many names?
PAL. PEG-PAL. Pegvaliase. Palynziq.
If you’ve ever felt confused by PKU treatment names — you’re not alone. They all describe the same enzyme-based treatment, just from different angles.I’ve updated my blog to explain it in plain language:
💚 what the treatment is
💚 how it works
💚 where it’s available (and where it isn’t)https://www.pigpen.page/what-is-palynziq/
#PKU #LivingWithPKU #RareDiseaseCommunity #PatientInfo #Phenylketonuria
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🎁 Please share with patients, clinicians, and anyone who might be catering for someone on a Low-Protein diet this Christmas
💡 Tips and links to help with a low protein Christmas or Thanksgiving. I’ve included menu suggestions & recipes, but let’s start with making the festive season friendlier to those on restricted diets.
Merry Christmas 🎄
#PKU #LowProtein #LivingWithPKU #RareDiseas #MetabolicDisorder
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🔬 The latest on PKU treatment from NSPKU's October conference - and what they might mean for those living with PKU.
💊 Sepiapterin (Sephience)
🧪 JNT-517, and MZE782
🩸 At-home phe monitors
🗓️ Published on PigPen.page (Want to be the first to see my posts? Subscribe for free emails.)
🔗 https://www.pigpen.page/whats-in-the-treatment-pipeline/
#PKU #Phenylketonuria #RareDisease #InheritedMetabolicDisorders #LivingWithPKU #NSPKU
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A great NSPKU conference in Cardiff yesterday. Lovely to see so many new faces, a reminder to head out beyond the usual places.
Lots of updates, new products and research coming. Just organising my thoughts and will report in the blog soon!
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Autumn comfort food after a bruising workout?
Low-Protein Mac & Cheese :)
Yum!
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🎁 Free to subscribe! Plus, you get a gift ebook: "PKU & Mental Health"
📬 October's newsletter looks at the turmoil in the UK pharmaceutical industry, why this matters - and what you can do.
💚 PKU news: Support NSPKU in parliament, another promising treatment in development
🧠 Brain news: Do we have a sideline test for concussion at last?!
🥘 Plus: 4 Low-protein recipes to try out
#PKU #LivingWithPKU #RareDisease #Concussion #LivingWithMildBrainInjury #TBI #PKUFood
https://www.pigpen.page/oct-2025/ -
A great start to the week!
The latest issue of the NSPKU News & Views popped through the door first thing.
#LivingwithPKU #PKUcommunity #PKULife #Phenylketonuria, #PKU
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🆕 Tips for Managing Prescriptions and Travelling with #PKU
[https://pkutalk.com/tags/PKU]Earlier this summer I had a great conversation with Tom and Jasmine for this new
podcast by the NSPKU.It was full of tips for:
- dealing with GPs
- packing for PKU,
- managing protein while travellingand just talking about how we manage our PKU "Home & Away"
Would like to know what you think of it!
#LivingWithPKU [https://pkutalk.com/tags/LivingWithPKU] #TravellingWithPKU
[https://pkutalk.com/tags/T… -
🥗 Recipe ideas! Four quick ‘school-night’ dinners
Quick, easy dinners that satisfy both the PKU diet and your taste buds.Three recipes are Phe-free; the fourth has 2.5 g Phe per adult portion, with optional additions if you need more.
https://www.pigpen.page/four-quick-school-night-dinners/
#LivingWithPKU #BackToSchool #PKU #PKUFood #LowProtein #LowProteinIdeas
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Catch up after the summer with curated news on PKU, brain injury, and mental health.
Monthly newsletters for subscribers.🆓 to join, and
🎁 get the "Mental Health and PKU" ebook too!
https://www.pigpen.page/sept-2025/
#PKU #LivingWithPKU #PKULife #LivingWithMildBrainInjury #Concussion #MentalHealth
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🆕 Tips for Managing Prescriptions and Travelling with #PKU
Earlier this summer I had a great conversation with Tom and Jasmine for this new podcast by the NSPKU.
It was full of tips for:
- dealing with GPs
- packing for PKU,
- managing protein while travellingand just talking about how we manage our PKU "Home & Away"
Would like to know what you think of it!
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🧒 PKU Kids Books! 🖍️ Accessible, fun, low‑protein books for PKU kids
Specially crafted for children with PKU, these books weave education and entertainment.
The Low Phe ABC Book introduces protein‑free foods in bright illustrations, and the colouring companion invites playful learning—ideal for family engagement.“A wonderful resource” Prof. Anita MacDonald
#pku #pkukids #phenylketonuria #livingwithpku #pcu #lowproteinlife #lowphenylalanine #lowproteinliving #raresisease #books #kidsbooks
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I wish more people knew about the use of food restrictions as a medical treatment.
Many see the word 'diet' or food restrictions as a lifestyle choice, to be ignored or dismissed.
In truth, many medical conditions are treated through the use of food restrictions.
You never know what someone else is dealing with, but you can choose how you react to their requests.
What do you wish people knew more about?
#LowProtein #PKU #Phenylketonuria #RareDisease #MetabolicDisorder #LivingwithPKU
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Hi everyone. There is an online event with 4 speakers who have PKU, and one Mum! We are all sharing our PKU stories in creative ways (writing, film, stage...).
I hope you will join us! 23rd May @ 6pm London / 7pm Berlin
https://www.linkedin.com/events/rarecreatives-lives-storyteller7327788292572069888/theater/
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PKU and being 'hangry'. Satiety (feeling full) can be a problem for those with PKU. Here are a few tips for those following a low-protein diet.
https://www.pigpen.page/pku-and-being-hangry/
#LivingWithPKU #PKU #PCU #Phenylketonuria #RareDisease #PKUFood #RareDiseaseAwareness #Hanger #Hungry
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April's update is PACKED with:
- 🐰 Easter tips,
- 🍰 ideas for school holiday baking,
- 📋 new brain injury research,
- 📝 and a chance to report on the NSPKU conference.
Sign up today and be the first to get #PKU [https://pkutalk.com/tags/PKU] news,
#low [https://pkutalk.com/tags/low]-protein recipes, mental heatlh tips in your
inbox!#LivingWithPKU [https://pkutalk.com/tags/LivingWithPKU] #PCU
[https://pkutalk.com/tags/PCU] #Phenylketonura
[https://pkutalk.com/tags/Phenylketonura] #PKUFood… -
April's update is PACKED with:
- 🐰 Easter tips,
- 🍰 ideas for school holiday baking,
- 📋 new brain injury research,
- 📝 and a chance to report on the NSPKU conference.
Sign up today and be the first to get #PKU news, #low-protein recipes, mental heatlh tips in your inbox!
#LivingWithPKU #PCU #Phenylketonura #PKUFood #RareDisease #BrainInjury #MentalHealth
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PKU was discovered in 1934, but was considered untreatable for decades. Then, a team at the Birmingham Children’s Hospital took up the challenge...
#PKU #LivingWithPKU #Phenylketonuria #Birmingham #RareDisease #RareDiseaseAwareness
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When you use up all your protein allowance on buttered popcorn…
#LivingWithPKU #pku #LowProtein #RareDisease #pcu #Phenylketonuria
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PKU-Friendly, low & no protein Easter Ideas from the team at Birmingham Children's Hospital!
#PKU #Phenylketonuria #LowProtein #LivingWithPKU #EasterIdeas #Easter
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CW: Blood
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CW: Blood
Monthly phe test day. Been a bit sick lately, and craving the calories. Hoping for a good result in a few days
Until then, fairy proud of this effort!
#PKU #phenylketonuria #LivingWithPKU #raredisease #testing
(Edited to add photo 🤦♀️)
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I’m one of many living with PKU, a rare disease.
Rare Disease Day is observed every year on 28 February (or 29 February in leap years). The day serves as a powerful focal point, driving advocacy efforts at local, national, and international levels.
Today, I will be joining an NHS event aimed at raising awareness of rare disease among medical staff.
Hope you all have a great day, and let me know what you are up to.
#PKU #phenylketonuria #LivingWithPKU #raredisease #rarediseaseday -
🦃🎄New blog for the festive season:
Tips and links to help with a low protein Christmas or Thanksgiving.
I’ve included PKU and low protein menu suggestions & recipes.
Plus, links to low protein shopping websites.
https://www.pigpen.page/pku-at-christmas/
#pku #pcu #lowprotein #phenylketonuria #phenylcetonurie #LivingWithPKU #ClassicalPKU #EasyPKU #thanksgiving #Christmas #metabolicdiet #lowproteindiet
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🦃🎄New blog for the festive season:
Tips and links to help with a low protein Christmas or Thanksgiving.
I’ve included PKU and low protein menu suggestions & recipes.
Plus, links to low protein shopping websites.
https://www.pigpen.page/pku-at-christmas/
#pku #pcu #lowprotein #phenylketonuria #phenylcetonurie #LivingWithPKU #ClassicalPKU #EasyPKU #thanksgiving #Christmas #metabolicdiet #lowproteindiet
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🦃🎄New blog for the festive season:
Tips and links to help with a low protein Christmas or Thanksgiving.
I’ve included PKU and low protein menu suggestions & recipes.
Plus, links to low protein shopping websites.
https://www.pigpen.page/pku-at-christmas/
#pku #pcu #lowprotein #phenylketonuria #phenylcetonurie #LivingWithPKU #ClassicalPKU #EasyPKU #thanksgiving #Christmas #metabolicdiet #lowproteindiet
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🦃🎄New blog for the festive season:
Tips and links to help with a low protein Christmas or Thanksgiving.
I’ve included PKU and low protein menu suggestions & recipes.
Plus, links to low protein shopping websites.
https://www.pigpen.page/pku-at-christmas/
#pku #pcu #lowprotein #phenylketonuria #phenylcetonurie #LivingWithPKU #ClassicalPKU #EasyPKU #thanksgiving #Christmas #metabolicdiet #lowproteindiet
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New blog:
➡️ How I responded when my GP surgery asked if I still need my PKU supplement and foods, with example email.
Fingers crossed, I seem to have solved the problem. Hopefully, this will help others.
"This was the first time a GP had questioned my PKU supplies. The temptation to respond with “are you being serious right now!” was pretty strong"
Have you had similar problems? I'd love to hear how you managed them.
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Just in time for the #FediBookFair!
Mental health & PKU, a #free excerpt from my book #LivingWithPKU is out now.
Living with #PKU: A low protein life with #Phenylketonuria is an invaluable resource for adults and teens with PKU, or for families new to the disorder
Just subscribe for the link. It is free to sign up, and you can leave any time you like.
Newsletters are hosted by #fediverse friendly #Ghost
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Grab your copy of 'Mental health & PKU' when you subscribe to https://www.PigPen.page
Membership is free and you get:
➡️ A free copy of the 7 mental health chapters from #LivingWithPKU
➡️ Email notifications of all new articles & #PKURecipes
➡️ to Join the conversation, comment and share your hacks.
Your comments and feedback help shape what comes next, so I'd love to hear from you.
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Thrilled to announce a new feature at PigPen 🐷 🖋️ Comments & engagement!
Huge thanks to @soheb for being a great beta tester.
Join the conversation, find your community and share your recipe tweaks & hacks.
Simple & free to join, I write about PKU, brain injury, & mental health.
Can’t wait to hear your thoughts and ideas.
#PKU #LivingWithPKU #LivingwithMildBrainInjury #mentalhealth #Author #AmWriting.
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It begins: my first phone call from the surgery to confirm if I absolutely need my monthly #PKU medicine “only it’s a bit expensive”.
Apparently, they plan to call to check this with me every month.
Going to head this off at the pass by getting my Clinic to write them a letter, and send them the #NSPKU documents explaining pku to #GP surgeries 🤞🤞🤞
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The PigPen 🐷🖋️ September update just went out!
➡️ An easy idea for lunchboxes for PKU & non-PKU
➡️ Last of the reports from the NSPKU conference in May
➡️ Rolling Stone long read on brain injury in American Football
Plus, tell me what you want to see in future newsletters. 🙏
#LivingWithPKU #PKU #PKUFood #BrainInjury #Concussion #TBI #NSPKU2024 #AuthorUpdate
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My notes on the Rare Minds workshop at NSPKU 2024 which discussed PKU and mental wellbeing. This workshop grew out of the amazing response to the Starting the Conversation workshop at ESPKU 2023.
#LivingWithPKU #RareDisease #PKU #LowProtein #NSPKU2024 #ESPKU2023 #PKUCommunity #MentalHealth
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ICYMI: The June newsletter from PigPen 🐷🖋️ went out last week.
➡️ Why bother registering even if you don't intend to vote
➡️ Reports from the #NSPKUConference
➡️ Help out with #BrainInjury #Research
➡️ Update on #TheRedHatStories #Kickstarter
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Pick up a copy at ESPKU - 30% off today!
The lovely @nspku ladies at registration can help you out. Or I am roaming the conference in my dinosaur shirt and can take card payments.
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Trying to be a grown-up with his own house and having to deal with PKU has it's challenges - like trying to find new, inventive ways to have low protein food *and* have my exchanges all in one go, three times a day, every single day.
This is going to be a thread 🧵 - feel free to read more below 👇
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Loganberries are a thornless cross between blackberries & raspberries.
Phe- free, tasty, and more productive than all my strawberry plants! -
If you are wondering “what is PKU?”, my good friend @poconnor has wrote a book on just that!!
It's called Living with PKU, and you can get it here: https://pigpen.page/books/ (£15 for paper back, £5 for eBook)
Between June and July, half of the profits go to the NSPKU charity (https://nspku.org) - a charity that does so much for PKU folks!
Please check out the book (and boost these posts)! Thank you!
#phenylketonuria #LivingWithPKU #nspku #books #bookstodon #boost #boostswelcome
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March PigPen Newsletter🍀 is now out, including:
➡️ Join the NSPKU on their 50th anniversary
➡️A new book for kids with #PKU
➡️news on home blood monitors
➡️training courses on understanding #BrainInjury.
#LivingWithPKU #LivingWithMildBrainInjury
https://mailchi.mp/a2b8a2525a2d/pigpen-newsletter-pku-brain-injury-and-mental-health-9087279
(I hope this toot works!)